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  • soaniamathur

Parenting With a Chronic Disease

Updated: May 4, 2019

Your illness does not define how "good" a parent you are...

I love being a mother. It is by far, in the chaos of my life and all the directions in which I’m pulled, the most important responsibility that I have. Sometimes I wonder how much my parenting has been affected by the fact that along with the obstetrical appointments, my growing belly and the morning sickness, there also was a new tremor in my right pinkie finger, a symptom that as a physician myself, I knew was not part of normal pregnancy. And before I could even welcome my new daughter into this world, I was burdened by a different unwelcome companion; a diagnosis of Young Onset Parkinson’s Disease. So as my life as a mother began, so did this challenge of living with a chronic, incurable disease.

Parenting is a challenge in and of itself and to do it well is even more difficult. Add into the mix dealing with a chronic disease and the hurdles are magnified. Doubts and concerns that may not enter the minds of our relatively healthy counterparts plague us relentlessly.

I remember the fear I felt as I gazed into my daughter’s newborn eyes for the first time – a fear of the future. Would I be a burden to my children in the years to come? Would others view me as an inadequate parent? Would I be able to keep up with the other parents? Would I be able to be an involved parent or would my disease dictate my day? Would my children be embarrassed by my visible symptoms?

These thoughts consumed me for a very long time and even though through introspection and experience I have a much more optimistic outlook, they do still surface on occasion. But overall I have learned a great deal from parenting three beautiful daughters over the last 21 years. And these are some important caveats.

(1) Consider redefining what you feel makes a “good parent”. Is it the physical aspect of raising your child? Playing sports, driving them everywhere they want to go, hiking, biking and so forth? Undoubtedly that can add to your relationship but it doesn’t define it. The ultimate goal of parenting I believe is to teach your children the necessary life skills and core character traits that will allow them to become productive, independent, compassionate, successful adults. And imparting these life lessons does not rely solely on your physical capabilities.

(2) Practice self-care. The old adage, “you can’t take care of anyone else unless you take care of yourself” is particularly applicable when it comes to chronic disease. Extreme self-care as I like to call it, is a necessary part of your lifestyle routine, not an indulgence. Otherwise it’s very difficult to attend to the needs of your family when you neglect your own.

(3) Build your support network. Family and friends, neighbors, parents from school – all can be a part of your strong social network. At one time it was said, “it takes a village to raise a child”. That is not really true any longer if we’re referring to society at large where we have to be more cognizant of potentially adverse influences. But we can create our own “village” made up of trustworthy, dependable and supportive individuals to help with some of the practical issues such as taking your child for a play date or picking up your children from school and so forth.

(4) Re-evaluate your negative thinking. Contemplate why you are concerned about how others’ may judge your parenting ability. Ultimately you will begin to see that this really has more to do with your own self-perception and insecurity. In order to move past those feelings, we first have to recognize those negative affirmations and objectively look at our parenting capabilities. Sure you may have to modify your activities due to physical limitations but that does not mean you can’t be a fantastic parent. And the evidence of your parenting will be manifested in your children. Don’t feel the need to explain or justify your abilities – focus on parenting with love and avoid worrying about the scrutiny you feel you may be under because truthfully there often is no judgment beyond our selves.

(5) Change your expectations.Our bodies are affected, our capabilities for certain tasks are impacted and if we remain obstinate about continuing on with the daily grind in the same way we always have, we are setting ourselves up for disappointment and frustration. From changing and bathing my daughters as newborns to styling their hair now that they are older. From helping them with their school projects to running after them in the yard. From showing them how to color inside the lines to teaching them how to use a knife and fork. Some of these examples may seem rather trivial but when a disease that never gave you a choice places those limitations on you, it is supremely frustrating. Yet no matter how frustrating, we must be wiling to compromise, to accept our limitations and our “new normal”. It doesn’t mean that you won’t be able to accomplish what you would like to but perhaps you may have to modify the activity, take more time to complete it or delegate some of the responsibility.

(6) Model for your children. Recognize that your children, regardless of their age, will take cues from you when they decide on how to react to your illness. And those clues may be verbal or nonverbal. Much like toddlers looks to their parents when they fall and they cry if their parent panics or they pick themselves up and toddle on if their parents are nonchalant. Likewise if your children see you constantly or overly upset, pessimistic or self-conscious about certain aspects of your illness, then they will adopt the same mindset. Keep that in mind particularly on those particularly difficult days.

(7) Don’t hide your emotions. Although we love to believe that we are invincible in the eyes of our children, I believe it is more important to show them that it is normal to feel negative emotions such as discouragement, sadness or frustration. Expressing these feelings does not mean that you are weak - just human. The important thing is how you face your feelings. To succumb under the weight of negativity is not a productive response and can be overwhelming for children to witness. However acknowledging that you are having a bad day, that you are not infallible teaches children that it’s ok to express those feelings and that it is possible to work through them in a constructive manner.

(8) Teach your children. Use this illness experience as an opportunity to impart important life lessons to your children. By having an open dialogue with your children about certain aspects of your illness experience, they will learn empathy and compassion, core character traits that will serve them well throughout their lives. Turn their “me focus” into a “we focus”.

(9) Don’t let guilt influence your parenting. The uncertainty of my functioning day to day is not only frustrating but when I think of my daughters, it sometimes leads to feelings of guilt. They are stressed enough by the pressures of school, their peers and dealing with what life in this fast paced world brings their way. And I hate to think that I'm adding to that burden. I'm sure on days that I'm feeling overly tired and symptomatic I've let the occasional extra treat pass by me or let the TV run longer than usual. Trying to make up for a missed trip to the park or a movie left unseen - trying to assuage my guilt as much as indulging them. Guilty parenting is not a good thing. Luckily time and experience have taught me that as children, their sense of security comes from knowing that overall I'm a soft place to fall but not a pushover - a fine balance for any parent regardless of health issues. A balance I struggle with but am mindful of.

(10) Finally try to abandon your fear of the future in order to begin living your present.

The joys of parenting are often made of the small stuff, the spontaneous, intimate moments you share with your child. If you’re preoccupied with disability and your focus is on all the ways you have changed and all that your illness has taken away from you, you will miss those moments that bring much happiness and satisfaction.

Parenting with a chronic disease is not a new phenomenon. I’ve lived with this challenge for over 21 years now during which time my chronic illness has progressed, making some of the practical aspects of parenting much more difficult. But by incorporating the fundamentals listed above I have found you can change your life experience as a parent. Although I obviously wish I didn’t have to deal with this diagnosis, it has taught my family and I a truly momentous lesson– that at some point life will bring all of us challenges and it is how we face those challenges that will determine the type of individuals we become – a life lesson that if learned will be tremendously impactful for the future of our children.

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